Over the next few hours we have a couple different visitors. The first set is a pair of Neuro-oncologists, here to discuss the tumor. It is a dorsally exophytic low grade glioma on her brain stem, specifically her medulla, and is about 1cm wide. It hasn’t grown in 9 months.
9 months ago Reagan had her second MRI with our old Neurologist. I had given all of Reagan’s medical records from the previous Neurologist to Children’s for their records. When they found the tumor, they referenced those records. And there it was, on a MRI she had done 9 months ago, her tumor. That 1cm that he missed. It was there in all of its full 1cm glory, but he missed it. He freaking missed it.
Since the tumor hasn’t grown in the past 9 months, we have time. It does not appear to be aggressive so we have the luxury of keeping an eye on it. The Neuro-oncologists tell us that our new lives will consist of MRI’s every 3 month to check in on this newly realized beast. If it changes, grows, or gets aggressive, we will make the decisions we need to make at that time.
Next up in the line of consultants, the Neurosurgeon. Based on the size and the fact that it hasn’t grown, he sees no reason to operate right now. He agrees we should wait and watch and make a decision if we have to.
This tumor could be there for the rest of her life and never change. It could disappear. It could become aggressive. There is no way to tell. Every three months we will check in on the beast and then go from there.
The last consultants of the day, the Epileptologist and a Ketogenic Neurologist, bring some hopeful news in regards to her Epilepsy. They recommend that we call to make an appointment to speak with the Ketogenic Neurologist so we can start down the path of the Ketogenic diet for her Epilepsy. We need see the Epileptologist every 4 months. She has been doing this for 20 years and Reagan is only the second child she has ever seen with this combination. We don’t ask about the other child.
The beast in Reagan’s head.
Leaving Children’s Hospital after 2 days, the beast in tow.